A brightening future: the state of ME/CFS research (Discuss! Simon M blog)

A brightening future: the state of ME/CFS research
- ME/CFS Research Review​

​

Although there are no treatments for ME/CFS on the horizon, things are looking up thanks to recent findings and a substantial increase in the amount of high-quality research. The field still needs much more funding.​

Do you remember the buzz around rituximab? Oncologists Dr Fluge and Professor Mella had noticed something interesting when they treated their cancer patients who also had ME/CFS with the cancer drug rituximab: the patients’ ME/CFS symptoms improved dramatically. In 2011, Fluge and Mella’s small trial of rituximab as a treatment for ME/CFS produced promising results. A larger clinical trial followed but, last November, the researchers revealed that the treatment was not effective for ME/CFS.

As a result, things feel a bit flat right now for patients. People with ME remain desperate for treatments but there is no clear path to effective therapies. Yet I’m optimistic that things will improve. The ME/CFS research field is the strongest it's been and there are good reasons to expect progress in understanding the illness – understanding that should drive the development of treatments.

Reasons to be cheerful, Part 1: promising findings
Most of the first 20 years of my illness have seemed like a long night of ignorance when it comes to understanding ME/CFS. Despite the efforts of small and dedicated but underfunded research groups, I saw little progress.

But things have really picked up in recent years, with several promising findings. A major focus for researchers has been on the ability of ME/CFS patients to produce energy....

Reasons to be cheerful, Part 2: the research field is getting stronger
These are all promising findings that might in time lead to treatments. But the ME/CFS research field itself is getting stronger, substantially increasing the chances of further important discoveries.

There are good things happening across the board in research. New blood is coming into the field: for example....

Future prospsects
Overall, and internationally, ME/CFS research is gathering momentum. The buzz of rituximab has been replaced by the growing hum of work on several lines of promising research. There’s no knowing when there’ll be a breakthrough leading to treatment, but I’m optimistic that there’ll be substantial progress over the next five years.

At worst, there should be a better grasp of key areas, including...

Read the full blog​

 

Very good, @Simon M! Things are unrecognisable from ten years ago when the XMRV saga seemed to kick everything off. But I think that XMRV showed that with an interesting lead, all sorts of people will get interested fast and that things could move forward very quickly with the right finding.

Even in the past few days we've been hearing about some intriguing new stuff from Jarred Younger on brain inflammation. The Stanford Symposium is on Saturday, and 50 scientists are having a three-day pre-symposium meeting right now.

But it would all go so much faster with governments putting in big money and playing a more proactive role.

 

Couldnt agree more, Simon, in fact just tweeted reply to someone that things have looked up more in last 2 yrs both research and MPs' interest than in preceding decades so hopefully the more recently wont suffer as long as old-timers.

As you say we just need governments to put in big money and we ourselves, families and friends to keep up the pressure to raise awareness and funds, and try to make ME a popular charity

NB useful a5 ME Awareness leaflet for general public plus a comic strip showing PEM are downloadable from
www.mechat.co.uk/db/tips.htm
No-one including delivery drivers, escapes my house without at least one, others to put in libraries, waiting rooms, churches, shops, noticeboards ...

 

I know that quite a lot of people are desperate for progress and while there are no clear candidates right now, things really are visibly moving on. The field is much stronger than even five years ago. This is all the more remarkable given that this has been done on a shoestring - relative to diseases with similar disease burden.

Basically, the field is ripe for investment. We need the big funders to act to give 200,000 peope in the UK, a million in the US and millions worldwide the chance to get their lives back.

https://twitter.com/user/status/1045317228852326401

 

I hope the fact that new scientists are attracted to ME/CFS signals to funding bodies that there is a need to allocate more funding. These scientists wouldn't be there if it wasn't important.

 

Thank you Simon for your summary. I don't know if others lose track of some of the advancements, but with memory problems I know I do. Your article has informed, and given a boost to my hope. I would hazard a guess it has done the same for others. Thanks again!

 

I do think that as the BPS'ites lose credibility with their harassment scaremongering, and more and more promising biomedical discoveries are made, then hopefully ME/CFS will become an exciting and fulfilling area of research for high-integrity scientist. Until now the SW brigade have been pushing hard to actively deter them. And as I write this it makes me think there might even have been a deliberate strategy on their part; the more biomedical research helps to uncover the truths, the more the BPS brigade's 'research' is exposed for the shabby science it. Cannot help thinking they might be highly motivated to try and thwart that.

Puts me in mind of a certain Trumpeting person seeking to shut down the press by name-calling, because he doesn't like what it says.

 

I know, such an unworthy thought of mine . Especially as they always demonstrate such open, honest, high integrity interactions with patients, good scientists, good politicians ... good grief!

 

Thanks, once again, for an excellent blog, @Simon M. Have you considered pitching it (or similar) as an article for a newspaper or magazine?

 

Yes indeed. 15-30 million people around the world have it with maybe 100 million first degree relatives and hundreds of millions of people who know people with the illness. I think a lot more could be raised privately if people put their minds to it. This would lead to more applications to government funders.

 

ME/CFS Research: What do patients want? Why isn’t it happening?

This is an expanded version of a talk given by Dr Neil Abbot (Operations Director of ME Research UK) at the Royal Society of Medicine conference “Medicine and me: ME and CFS — Hearing the patient’s voice” on Saturday 11th July 2009.



http://www.meresearch.org.uk/information/publications/what-do-patients-want/

This was nearly 10 years ago but well worth another read as it could almost have been written yesterday.

 

sorry.
I've been reading about the conference in 2008.......really depressing.

I had no idea at the time that any of this was going on and I imagine that there are an awful lot of ME/CFS sufferers now who are also equally oblivious. But unfortunately keeping patients/members of certain charities in the dark about the real state of affairs seems to have been the norm.

I just hope that this time round we/someone can break the cycle.